Small Fiber Neuropathy
 

:mad: I am so mad at my neuro doctor that I had to get a new one. I had an appointment with him the other day. He asked me how I was doing. I told him I thought my neuropathy was moving into my stomach, back and hands. He had the nerve to say to me, thats what happens when you have neuropathy. I will see you in two months. WHAT?? I think my mouth dropped. Has anyone ever had a doctor be so rude to you? He didn't even bother to say, hey lets do some tests to see if this is true. What a JERK. Well at least I have a new one, lets hope he is compassionate and wants to help me. Thanks for listening. By the way I am 40 and have had neuropathy for about 6 months, the only symptom I have is a stabbing, sharp, burning pain in both of my feet. :Sob:

Michele :OuttaHere:

Sorry about your experience!
 

I'm sorry about your bad experience! I had to "fire" my first neurologist too. Not because he was rude, but because he didn't seem to care enough about what I was experiencing to take a good look at my blood labs and try to interpret my grossly abnormal results. I guess my "case" didn't interest him very much. Anyway, sometimes people who are healthy don't understand what it is like to have scarey and uncomfortable symptoms. I hope you can find a good neurologist who is more compassionate!:winky:
NancyKay

Thanks
 

Thanks NancyKay, I sure wish I new what I was doing on this site. I am trying to reply, but I want to reply with a seperate space, do you know what I mean? I guess someday I'll catch on.
I know what you mean when people are healthy. Sometimes they just have no clue what a sick person is going through and they treat you differently. :cool:

use the post reply in the lower left hand corner beneath where the last post is

Thanks
 

I think I may haved gotten the idea on how to post to a post. :p

Everyone have a woderful night and give each other hugs. :hug:

Thank you so much HeyJoe for the direction!! :wink:

Michele

you know...
 

Over the years I've watched many people come on boards with this same issue.
"My doctor doesn't care".

I think that doctors know they cannot fix PN, so they are not motivated in most cases to do anything. They don't understand that :

1) finding a cause is important. If you have autoimmune neuropathy you can
try IVIG, or look at Gluten free life to help with it.
If you have ingested a toxin, you need to know what it was, to avoid.
If you have thyroid issues, or glucose resistance, you can fix that.

2) You can heal. You can try some of the nutritional supports suggested here.
You can have a MMA test to see if you are absorbing and utilizing B12. You can take B12 yourself...it is over the counter.
Other nutrients help nerves repair themselves. The peripheral nervous system is capable of that regeneration. But you won't hear doctors suggest this simple method because they weren't taught that in school.
Even Dr. Latov has put in his book erroneous information where nutrients were suggested. That is indicative at how little they think of it.

So getting a good diagnosis is important. But once you have that, traditional medicine has little more to offer. Strong drugs with heavy side effects are offered to "help", but they most often don't..they just create more problems.
People with severe pain issues, are deserving of adequate pain management, but many doctors ignore that too (here is where testing is very helpful in proving your pain).

Mrs D,

I don't know if he didn't care, but he certainly has no empathy. I think when you become a doctor, you should want to try to help that person, even knowing that their is not a cure to help that person.

I know the cause of mine was from diabetes, from 10 years of not listening to my doctor and doing what I wanted to do. So here is my damage........ small fiber neuropathy and I am trying to live with the damage I have caused. Of course when I was diagnosed last year, is when I decided to get my sugars under control. I guess better late than ever, so they say. Yes, I am depressed......... taking medicine for that........ seeing a therapist for the neuropathy, and I am only 40 years old. I should be a poster child for or rather a poster adult for diabetes.......

Cwcntry: I agree with everything Mrs D has said. First you need to find the cause. You don't say in your post what has caused your neuropathy. Have you had a work=up for a cause? If not, please look at hte lizajane.org list of tests, and bring them to the next neuro when you go. I'd suggest you request copies of ALL labs and tests that the current neurologist has done. If he's nearby, you can pick them up at his office; if not, have them mailed or faxed. But you need to know what's been done so far, and what needs to be done.

You have something which is evolving, and I dont' have a sense of how quickly this is happening. Nor do I know your underlying health. Perhaps you've posted it elsewhere, but it would help us help you.

PN
 

I have the small fiber peripheral neuropathy caused by diabaetes. I was diagnosed with diabetes over 10 years ago and never controlled my sugars. Now I am payin the price. I do have my numbers under control now. I guess better to be safe then sorry. I just got a copy of my records. He did I am not sure what is called but hooked me up on my legs and then stuck me like it seemed like electricity shocks. Just did lab work to see what my levels of tegratol were doing in my blood. I am seeing a new neurologist next week because this guy to me was such a jerk.

Michele, you may find this interesting -

Antioxidant Alpha Lipoic Acid (ALA) Significantly Improves Symptoms of Diabetic Neuropathy
Monday, April 07, 2003
ROCHESTER, Minn. — A collaborative study between Mayo Clinic and a medical center in Russia found that alpha lipoic acid (ALA) significantly and rapidly reduces the frequency and severity of symptoms of the most common kind of diabetic neuropathy. Symptoms decreased include burning and sharply cutting pain, prickling sensations and numbness.
The findings appear in the March 2003 issue of Diabetes Care, http://care.diabetesjournals.org/.
"There appears to be a rather large effect on the pain of diabetic neuropathy with ALA," says Peter Dyck, M.D., Mayo Clinic neurologist and peripheral nerve specialist. "The magnitude of the change is considerable. We also found some improvement in neurologic signs and nerve conduction. We were surprised by the magnitude and the rapidity of the response."
When patients were given ALA, also known as thioctic acid, the researchers found statistically significant improvement in the symptoms of diabetic sensorimotor polyneuropathy (DSPN) damage to multiple nerves caused by diabetes. The researchers measured improvement by a total symptom score, a summation of the presence, severity and duration of burning and sharply cutting pain, prickling sensations and numbness. The patients who took ALA saw a 5.7-point total symptom score improvement from the start of the trial, while those who took placebo, an inactive substance, only improved 1.8 points. ALA produced no unfavorable side effects in the patients taking this substance.
"It's very safe," says Dr. Dyck. "There have been no known complications."
The alternatives for managing the symptoms of DSPN — narcotics, analgesics or antiepileptic drugs — are less than ideal, according to Dr. Dyck.
"Most people can't work while on narcotics, and there's the concern about habituation," says Dr. Dyck. "If you take analgesics, you can get kind of dopey."
Dr. Dyck says that the intravenous ALA preparation at the dosage he studied is not available to U.S. physicians. It is available in oral form and in smaller doses in drug stores.
"I think it's a promising lead for the future, in that antioxidants may be implicated in the cause of diabetic neuropathy, and ALA might conceivably be a preventative or interventative," says Dr. Dyck. "It may well be worthwhile for treatment, but I'd rather patients with diabetic neuropathy not go out swallowing large amounts of this drug yet. It isn't Food and Drug Administration-approved for this purpose."
Dr. Dyck adds that a large, multi-center trial of oral ALA is under way. "We should see what the further data show before we give this widely to patients with diabetic neuropathy," says Dr. Dyck.
Mayo Clinic physicians Dr. Dyck, Phillip Low, M.D., and William Litchy, M.D., were involved in the design and helped oversee the phase 3 study, which included 120 type 1 or 2 diabetic patients, ages 18-74, with DSPN. The study was conducted at the Russian Medical Academy for Advanced Studies in Moscow. After hospital admission, patients were randomized, or selected by chance, to receive either ALA or a placebo in 14 intravenous doses over three weeks, following one week in which all participants received placebo. The study was double-blinded, thus neither patients nor investigators knew which patients received each substance. The researchers then measured the severity and constancy of each patient's symptoms of burning and sharply cutting pain, prickling sensations and numbness. Trial participants' progress was measured by written surveys in addition to testing nerve conduction, function of the autonomic nervous system function and sensation.
If the drug proved effective in this trial, the researchers also wanted to find out why it worked. They found that ALA improves the nerve function damaged by chronic hyperglycemia, or the condition when patients' blood sugars consistently are not under proper control.
"It is known that ALA is a very strong antioxidant," says Dr. Dyck. "High glucose in diabetes leaves trace chemicals harmful to cells — that process is called oxidative stress. If you burn something in the oven, it leaves soot. Similarly, in disease, there is 'soot,' and there are mechanisms that relieve 'soot.' Antioxidants promote getting rid of oxidative stress products.
"Oxidative stress is known to be implicated in many disease processes, including diabetic neuropathy," he adds. "If nerve fibers partially degenerate, you get pain and prickling and other symptoms of diabetic neuropathy."
Since 1959, physicians in Germany have treated diabetic neuropathy with ALA. However, there was insufficient research evidence to warrant its use, Dr. Dyck says. The manufacturer of ALA, a German company called Viatris Inc. (formerly ASTA Medica, Inc.), approached Dr. Dyck and other physicians about conducting clinical trials with this supplement to test its effectiveness in alleviating diabetic neuropathy.
Diabetic neuropathy may compromise a person's quality of life. Previous studies have shown that patients with this syndrome may become depressed or anxious and may have trouble with work, social obligations, sleep and other daily activities.
Although regulating patients' blood-sugar levels is the ideal way to prevent diabetic neuropathy, physicians have recognized that not all patients can or will control their blood sugars to the needed degree, according to Dr. Dyck. Some patients do not monitor their glucose levels or use their insulin injections or pumps often enough. For other patients, such as type 1 diabetics, blood sugars may fluctuate wildly and prove difficult to control tightly.
According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), 11.1 million people in the United States have been diagnosed with diabetes, while an estimated 5.9 million more remain undiagnosed. NIDDK estimates that of these, 50 percent experience some type of neuropathy.
Lisa Copeland
507-284-5005 (days)

also about Gamma Linolenic Acid - http://www.enterhisrest.org/articles/diabetes_help.pdf

Brian :)